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Patient Stories

Elisabeth Dykens, Ph.D.: 2018 Rare Impact Award Honoree

Elisabeth Dykens, Ph.D., a clinical psychologist and researcher studying rare genetic… Read More

Maria Kefalas, Ph.D.: 2018 Rare Impact Award Honoree

In 2009, Sociology professor Maria Kefalas, Ph.D., and her husband welcomed… Read More

Ellen V. Sigal, Ph.D.: 2018 Rare Impact Award Honoree

A passion for patient advocacy, which has become her… Read More

Chris Ulmer: 2018 Rare Impact Award Honoree

 

2018 Rare Impact Award Honoree, Chris Ulmer

“Every time I meet someone new, I am focused on going into the interaction with an open mind and accepting heart,”… Read More

Mackenzie’s Mission

In this guest blog post submitted by Mackenzie Boedicker and her mother, Deb,  we share the story of one woman’s mission to alleviate the struggles for those who live with amyloidosis. Mackenzie… Read More